New to AP and improving everyday

[Crippledsteve]

Hi everyone thanks so much for the information you have given me I have stopped my methotrexate 3 weeks and ago and got my hands on minocin brand in Ireland. I’m am improving everyday and it’s only been 4 weeks I take 1 a day x 100mg. I have felt better than I have the whole 8 months I was on methotrexate. I’m hoping for steady improvement I just have 1 question. Do people stay in remission when then stop the therapy? What happens if the antibiotic stops working in months or years to come is there alternative antibiotic that work ? I would love to hear a stories of somebody who stopped the treatment and remained in remission.

[Maz]

Hi Steve,

Hopefully others will chime in with their personal experience of the AP treatment but in relation to your questions, you should find FAQs # 29 and 30 helpful in these regards – click hyperlinked text below:

After Starting AP

I seem to recall it takes about a month for methotrexate to wash out of one’s system and if someone stops it suddenly, it’s not unheard of (depending on level of immune-suppression) for rebound pain to occur, as well as some degree of herxing. While it’s wonderful to feel so well so quickly, it is likely premature to consider stopping AP so early. This is because a rheumatic disease can be years in the making and it takes time to correct the “terrain” (e.g., lifestyle, dietary, hormonal changes, etc), so to speak. That said, in rare instances, some folk have quick recoveries, especially those who have seronegative RA (no RF or anti-CCP blood markers).

Are you working with a doctor who can monitor these things for you?

[bonnielou]

Hi Steve — glad to hear you are having such a good response. I have been on AP for 15 years now. I started at 100mg MWF. After 5 years I developed some new symptoms in my hands, and after consulting with an experienced AP physician, I went to 200mg MWF. Over the last year, my current doctor has encouraged me to cut back — so I am down to 5 doses weekly. I pay close attention to my body — but after hearing so many stories from the community, I doubt that I will ever completely stop the treatment. I still test positive for mycoplasma, so I know that bug is still alive in my tissues. Don’t be in a rush, and get some advice from an experienced doctor if you can.

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[Crippledsteve]

Thanks for the replies I am currently not working with a doctor to monitor blood at the moment but have an appointment with my rheumatologist in 3 weeks I’m going to try and convince him. I’m currently taking 100mg everyday as I seem to tolerate them fine also on a very strict healthy diet and working out every morning. I’m still improving everyday and have alot more energy than I ever have. I am seronegative also and 27 years old my diagnosis was due to inflammation on x rays.

[Maz]

Hi Steve,

Great to hear your update and that you’re still on a positive trend! Youth and being male can help!

If you need an AP doc in Ireland, there’s one in Carrigaline and would be happy to send you deets in a PM.

Also, in case this helps when you see your rheumy, if you follow this link to the website Journal articles section, you can print out the American College of rheumatology page Which outlines the use of Minocycline for RA as a DMARD (disease-modifying anti-rheumatic drug.

Minocycline Fact Sheet

Some rheumies are open to prescribing and others may be reluctant, so perhaps this blog article will help?

When theory and reality clash: When is the best time to try minocycline for Rheumatoid Arthritis?

All the best for your doc appt.

[Crippledsteve]

Hey thanks for all the info I took a break shortly after this post thinking I was fine but symptoms came back I’m back on 100mg a day I’m 1 week in and pain is already getting much much better but im struggling with nausea throughout the day does this get easier long term as the body adjusts ?

[Maz]

Hi Steve,

Glad you’re feeling a bit better! First few months can be a bit up and down – longer for some, and many don’t expect notable improvements for a year or so. Labs sometimes improve before symptoms and sometimes vice-versa.

Check out FAQ #7 for info on the early nausea some folks experience and how you might counter it:

Before Starting AP

Hopefully it will resolve with those insights and over time. Dizziness occurs for some, too, but I found it was transitory.

All the best!

[Crippledsteve]

I never had positive labs only x ray imaging and some skin and nail issues diagnosed with psoriatic arthritis, have felt great stiffness and pain wise I might cut back to mwf 100mg and see if it helps with the nausea.il check faq now thank you.

[Author]

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